Grieving mum calls for end-of-life hospital suites after daughter's 'distressing' death in Edinburgh
A grieving mum has called for dedicated end-of-life care suites for children.
A grieving mum whose six-year-old daughter died from cancer has called for dedicated end-of-life suites in children’s hospitals following a "distressing" palliative care experience in Edinburgh.
Stephanie Kent, from East Lothian, questioned why her daughter Flora Gentleman, who had neuroblastoma, was given a peaceful space to spend her final hours only after she had died, but not while she was dying.
When her family learned in 2024 that she was receiving palliative care, they chose to keep her at the Royal Hospital for Children and Young People in Edinburgh, where she knew the oncology team well.
As her condition deteriorated, Stephanie said the family struggled to get Flora’s pain and distress adequately addressed, amid disagreements between medical teams over how to manage her symptoms - one of which erupted at Flora’s bedside.
Stephanie revealed that the palliative care team did not review Flora in person until the family demanded it.
After a subject access request, she found more than 15 entries in Flora’s clinical notes recording concerns about her pain and distress over 48 hours.
The situation escalated when Flora’s long-standing oncologist took over her care, with Stephanie saying the difference was dramatic as her daughter finally got the attention she desperately needed.
Flora’s symptoms improved within 12 hours and she was peaceful within 24. She then passed away two days later.
The six-year-old was moved to a dedicated bereavement suite after she died.
Stephanie said: “It was a really beautiful, quiet space. It was lovely. And I just feel like, why would she have that after death, but not before death?”
She wants dedicated palliative care suites and for staff to take parents’ concerns seriously, particularly when children are autistic or non-verbal.
Stephanie filed a complaint. NHS Lothian upheld part of it, acknowledging that Flora’s neurodiversity had not been sufficiently considered during her palliative care.
In its written response, the health board apologised that Flora and her family experienced "unnecessary suffering” and said senior managers were disappointed her concerns were not acted on promptly.
It accepted that a discussion about sedation - something Flora’s family were wanting to ease her pain - should never have happened directly in front of Flora and that it should have been done in a separate meeting room as they had requested.
The board concluded that heavily sedating Flora was not in her best interest because of the risk of airway obstruction. It said her distress was “not obvious” to ward staff, while acknowledging her parents felt she might be distressed.
NHS Lothian also apologised for how some palliative care comments were received, including a remark about Flora being on enough pain relief to “knock an elephant out”.
Stephanie said she remained dissatisfied and did not feel reassured that lessons had been learned.
Dr Tracey Gillies, Medical Director, NHS Lothian, said: “We extend our deepest condolences to Flora’s family and apologise for any additional distress they experienced at an already difficult time.
“NHS Lothian strives to provide the highest quality of patient-centred palliative care at the Royal Hospital for Children and Young People.
“A full investigation into Flora’s care has been undertaken and the recommendations have been actioned by our teams and communicated to her family. The case was also referred to SPSO for independent review and the Ombudsman was satisfied that appropriate action has been taken by the board. A meeting has been arranged with Flora’s family in the coming weeks to further discuss her care.”
Stephanie described Flora as a happy, bright girl with a huge personality who loved making people laugh.
She added: “For someone non-verbal, she was the loudest person I know.”